Indigenous Linguistic and Cultural Concepts of Heritability and Comprehension of Genomics Research in Africa (INDIGENE) Study

Principal Investigator:

Scientific Description:

The Indigenous linguistic and cultural concepts of heritability and comprehension of genomics research in Nigeria (INDIGENE) study is a project designed to evaluate the use of linguistic and culturally derived concepts of genomics and heritability in an indigenous African population and use this to develop enhanced consent forms. The project will study existing linguistic and cultural concepts of genomics and their relationship to non-communicable diseases in indigenous communities in Nigeria. We will conduct key informant interviews (KII) and focus group discussions (FGD) to identify these concepts of heritability and how they are used to understand common heritable traits and diseases in indigenous communities in Nigeria. Next we will evaluate the extension of these concepts to improving comprehension of genomics research of cervical cancer in Nigeria

We will then compare the impact of consent forms containing indigenous cultural and linguistic concepts of heritability with that of standard consent forms on the comprehension of informed consent for genomics research of cervical cancer in Nigeria and evaluate the perception and satisfaction of research participants with informed consent processes that incorporates linguistic and culturally derived concepts of heritability for genomics of cervical cancer research in Nigeria

Update Aims:

    1. Specific Aim 1: Study existing linguistic and cultural concepts of genomics including heritability and their relationship to non-communicable diseases in indigenous communities in Nigeria
      Aim 1.a: Conduct key informant interviews (KII) and focus group discussions (FGD) to identify existing linguistic and cultural concepts of heritability that are used to understand common heritable traits and diseases in indigenous communities in Nigeria.

Aim 1.b: Evaluate the extension of these linguistic and cultural concepts identified in Aim 1.a. to improving comprehension of genomics research of Diabetes Mellitus in Nigeria.

    • Specific Aim 2: Evaluation of the impact of incorporation of cultural and linguistic concepts of heritability on the comprehension of informed consent in genomics research of Diabetes Mellitus in indigenous Nigerian population.
      1.2.a Aim 2.a: Compare the impact of consent forms containing indigenous cultural and linguistic concepts of heritability with that of standard consent forms on the comprehension of informed consent for genomics research of Diabetes Mellitus in Nigeria.

1.2.b Aim 2.b: Evaluate the perception and satisfaction of research participants with informed consent processes that incorporate linguistic and culturally derived concepts of heritability for genomics of diabetes mellitus research in Nigeria.

Specific aims of the Supplement:

  1. Aim 1: Develop training materials on ethical review of genomics research
  2. Aim 2: Provide training on delivery of online training materials using Camtasia and
    Moodle Courseware
  3. Aim 3: Development of course content for training on ethical review of genomics research
  4. Aim 4: Pilot evaluation of Online Course materials on ethical review of genomics research
  5. Aim 5: Finalization of online course materials on the ethical review of genomics research

Lay Description:

Indigenous linguistic and cultural concepts of heritability and comprehension of genomics research in Africa (INDIGENE) is a study designed to identify how indigenous populations understand and discuss heritable diseases and use these understanding to develop enhanced consent forms. We will then test the impact of these enhanced consent forms on the comprehension of informed consent in genomics research of diabetes mellitus

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